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End of life care experience: survey

Do you have end of life care experience? Can you help with a new survey? The Co-Care project is trying to understand how volunteers can provide support for family caregivers at home.

They know that so much end-of-life care for people at home depends on the work of unpaid family caregivers and want to understand a bit more about how this is working, where it isn’t and how things could be improved.

My end of life care experience

My partner’s mum has recently gone into Sheltered Housing after months of care at home with family.

Imagine the challenge this time has been for her. The episode began when, at 86, she no longer felt able to stay at home. She moved from the house and hamlet she’s lived in for decades to a new city, leaving behind her few remaining friends, her view of the sea, her garden, her neighbours, all that’s familiar in her surroundings and most of all, her independence.

She’s moved to be near her daughters … there’s no-one else who can care enough.

Many of us will have some experience that backs the view that the closer a relationship is, the more likely it is to be dysfunctional! We have baggage. We have expectations. We have history. It’s been a trying time for all.

It’s been incredibly complicated, time consuming and emotionally draining for my partner to try and work out who does what, where we can get help, how the complex eco-system of care works (and sometimes, where it doesn’t appear to). It’s been a full-time job.

8 months on, now that her mum’s moved into Sheltered Housing, things seem to be clicking into place a little more in terms of accessing help. But what a journey. What a big old shock to the system (everyone’s). Even with her daughters having shipped up all her familiar surroundings and recreated a home that looks and feels like the old one. Even with those comforts and all the personal belongings on hand, moving into a new complex, with new switches and gadgets, new rules and schedules, new faces and names is a steep learning curve. It would be a challenge at any age. When you’re at your most frail, most vulnerable, it’s enormous. What a big ask: just wobble down to the day room and make new friends.

How great it can be when someone new steps into the space and shifts the mood and energy.

How grateful we’ve been for the amazing network of help… social services, housing, befrienders, carers, day care centre, Community Connectors. We’re about to try a buddy service that I think will be life-changing. Just a wee help up. A confidence booster. Get her going again.

Please help with the survey

If you have end of life care experience, like we have, please take part in the survey. It’s all anonymous and confidential.

The Co-Care project is building on research that suggests befriending and home visits might be a big boost to people who are providing care at home. (We couldn’t agree more.)

The information from the survey will be used to build a picture of the kind of support that volunteers provide nationally. It will also help us understand what is most important to volunteers, family caregivers and professionals.

Information from the survey will contribute to plans for a larger project to work with volunteers, families, and health care professionals to evaluate the benefits of volunteer-led support for family caregivers in the community.

The Co-Care project supported by the National Council for Palliative Care (NCPC) and Dying Matters. It is funded by the National Institute of Health Research (NIHR), researchers from the Faculty of Health Sciences, Southampton University. If you have any questions about the survey or the Co-Care project, please contact Dr Christopher Bailey, Lead Investigator, Faculty of Health Sciences, University of Southampton. Email Christopher or phone on 023 8059 7861.

Share your story

We love to share stories on Final Fling. It helps us all navigate the journey to hear others’ tales and experiences. Contact us if you have a story to tell. 300 words and a photo will do the job. Don’t worry too much if writing’s not your thing. Just give us the bones of the info or phone and chat through it. We’ll polish it and publish it.

Final Fling is for people who like to be in control of life and death decisions. Know your options. Make choices. Leave instructions. Stay in charge. Right till the end. And meantime, live life to the full.